Saturday 29 August 2015

Florida Day 1: Hangry

It's midnight (OK, my body thinks it's only 10 p.m., but the clock says 12). I haven't eaten in at least eight hours and have no clean underwear. And no those things are not related. We just forgot to pack me any underwear.

This is Day 1 of our wish trip to Florida.

Dominic, thankfully, is asleep. Trish is out at Wal-Mart because apparently when there's lightning, we can't eat! Holy crap why did Give Kids the World tell us specifically not to eat before we showed up? They said we would be SO. WELL. FED. At this rate, only if I cut off an arm and microwave it.

I don't mean to be hangry (hungry + angry). It just happens. This place really is awesome, which I will appreciate more tomorrow. But let's explain how we got to this point.

After a long day of platelets and red blood cells Friday at the Alberta Children's Hospital in Calgary (an oil change for his wonky, leukemia-filled blood), Dom woke up fantastically, my parents showing up at his bedside to whisk us away to the airport.

Trish's mom met us there and they all saw us out. Bob, the security guy at U.S. customs, told us to use the Nexus line for passports once he saw our matching white Children's Wish shirts.

"If they give you any trouble, tell 'em Bob sent you," he said.

I am never taking this thing off.

The staff at WestJet found a way to get us into their version of first class, known as Plus. More legroom, free food, just fantastic. They have a reputation for going all out for special circumstances and Dom was no exception. 

He has always done well on airplanes. He wasn't horrible on this five-hour flight, but it wasn't all sunshine and rainbows either. When Trish is around all he wants is to cuddle with her. And when the seatbelt sign came on, boy was he not impressed to be stuck in a seat on his own, no cuddles allowed.

In Orlando, a representative from the magical Give Kids the World resort met us and got us to our rental van. Yes, van. Dom requires so much medical stuff it just made more sense. His current oxygen concentrator required seven three-kilogram batteries just to make it through the flight, for example. We can thank the trip to Vancouver in January for teaching us that lesson.

Things are so much worse than they were in January though. Back then he was on a handful of medications. Today, we have a literal bucket of more than a dozen, including two chemotherapies. All to keep him alive a bit longer.

We were already hungry but the resort had pre-warned us not to eat, that they would have something waiting for us. All the food here is free and there's even a couple restaurants on site that deliver. Perfect. But when we got here, thunderstorms apparently changed all that. They lock down their delivery drivers for safety's sake, and wouldn't even let us come and get something.

So she drove down the road to get McDonalds instead.

We also got set up with a night nurse, contracted in from an outside company. More on this later, but so far both sides are, shall we say, learning this bizarre situation. Here we are in this amazing villa, but the nurse is also just sitting on the couch, 8 p.m. to 8 a.m. At Rotary Flames House we had full-time nurses, but also our privacy. Here? Well, it's a bit weird. I suppose if we make the most of our days we will love having the help.

 I'm hungry, but also thankful. We had a couple moments today where we just looked at each other and said "I can't believe we made it here." We've been saying that every day for months now, given that he was supposed to die in January. But all the work it took to get us to Orlando today — from doctors, nurses, the Children's Wish Foundation, and Dom himself — makes this trip a true miracle.

Tomorrow: A trip to a new hospital and getting familiar with Give Kids the World.


  1. So happy to read this.
    Sorry about the food.
    Give my love to Dom!
    Have at the most amazing time. Can't wait to hear all about it.

  2. Wow! Sounds like a little adventures already!! Hope you guys get to have a good time the next few days. The first travel day of any trip always takes the shine off a bit, but in the morning once you start having fun you'll forget all the annoying little delays and inconveniences and start concentrating solely on fun!!
    Thanks for the updates, hoping to see More Dom smiles in his new environments!

  3. You will feel so much better once you are well fed.

    I'm really looking forward to hearing about the next few days. What a super special time for all of you.

    Soak it all in!

  4. So happy to hear you are on your wish trip... hoping you all have a blast. Continued prayers :)